Found out the dreaded crap has spread, I guess for 2 weeks I've actually known it would be the verdict, I just didn't wanna hear it. Now both arms affected. I don't wanna live like this, I hate the pain, the thought both arms being in horrible pain with my first biological grand baby on the way. The thought of losing the ability to drive, to feed myself to do anything! I just hate it hate it hate it! Just really got this under control in the past year of learning to live one hacked but no hands? This sh%t sucks! Sorry but it does I really need help. Someone who understands, can relate, can help me not be depressed. No one here truly understands they try but they don't live in this painful horrible body! Please Facebook me heather elliott Roode or email me destination2_unknown@yahoo.com please anything from meds, natural or prescriptions, kind words of encouragement, someone to vent with so I don't so feel so alone. Thank u

I'm so sorry you're in such pain. I just got back from my pm dr earlier today for a med check and told him the pain in my body is still everywhere. I have had rsd for over two years and fibromyalgia for about six months. I also have to see a gastro dr because I have horrible pain in my stomach and will most likely need surgery to get my gallbladder out. My rsd has spread to all limbs and I showed my pm dr how swollen and red they are. I told him they hurt terribly. He said it's probably the rsd and fibro combined. But thinks the fibro is causing more widespread pain than the rsd, but their not sure. Then I was prescribed more pain killers for another month and was on my way. Next is the psychiatrist, then gastro specialist, than surgeon, then pain therapist, then dentist, then neurologist, then rhuematologist. The list goes on and on. This is my life and I hate it too. I hate the constant pain and the not knowing what's going to happen next. It sucks. RSD and Fibro suck. It hurts to move and without my pain and anti anxiety meds I wouldn't be able to get out of bed. I also get infections alot too. Right now I have a UTI and am taking more pills for that and then more pills for nausea from all the other pills I take. I need to get a bigger pill case because my pills don't fit in my old one anymore. I was feeling pretty depressed and in alot of pain on the way home.
I can't drive anymore so my husband drives me to all my dr appts. He saw how sad I was and surprised me by bringing me to my favorite store. The Clarks shoe store outlet. I was treated to two pairs of lovely shoes, (Not that I need them but I love them so much), and it just lifted my spirits. I'm so grateful for my husband and son and all of my loved ones and wonderful drs who help me to get through each painful day. And of course the wonderful people on this forum. And though it doesn't take away the pain, sometimes doing something you love helps makes you not think about it as much at least for a little while. I can't wait to wear my new pink loafers tomorrow. And my new fuzzy slippers tonight. I'll just be walking down the street and back (one of my daily exercises), but I don't care.And even though with each step I hurt, I will hurt in style with a smile on my face! Maybe you can find something you love to do that can help you smile through the pain too. I hope you feel better soon and am here if you need to vent. You're not alone. I've found so many people on this forum just like me and so will you. They are the best. I just focus on one day at a time. It's cliche, but it helps me get through the painful days along with my meds from my super drs, my loved ones, my friends on this forum (And of course my new pink shoes and fuzzy slippers!) Take good care. My thoughts and prayers are with you.

My husband and our kids n my sister n her boy do so much for me. I'd be lost without them all. The fear has me most worried. I love being w our adopted grand babies even when the monsters act up, I feel needed with them. But I can't do as much for them anymore. The muscle cramps n spasms hurt enough in one hand/arm now they start in the other yuck yuck yuck and this lack of sleep is killing me! I know I'm not alone but I feel alone. I live in Maine and I no no one else with this dreadful disease I call crap!

I get muscle spasms in my left calf sometimes. My husband rubs it until it subsides and then I put a heating pad on it. Sometimes I even take an extra percocet (which my dr okay'd) but I try to keep my perc intake to a minimum. I don't sleep much either. I read somewhere that rsd affect a part of our brain that helps us to sleep and causes insomnia. My pyschiatrist prescribes zoloft for anxiety and xanax for depression. That along with my neurontin and percocet seem to help me sleep at least for a little while. (xanax helps relax me and percocet just makes conks me out because its so strong.) I use a heating pad on areas that hurt too, but when my skin burns, I put voltaren gel on. My dr prescribed that too. I felt alone too for the longest time. Even though I have loved ones and drs to help, they don't know what it feels like to have rsd and fibro. That's why I am on this forum. I've met so many people who have this too and have provided such helpful advice and comfort. I know that we have never met, but feel like they are a part of my family now. I need their support and hope that maybe I can help them somehow too. I hope you know that you're not alone either. I'm here and so are many others who care and truly understand. And I hope tomorrow will be better for you. Some days are worse than others, so maybe tomorrow will be better. Maybe try some sleepytime chamomille tea or a warm bath with epsom salts. (I learned about that from my friends on this forum.) And sometimes a funny show helps too. Well I hope you fell better and less lonely and get a peaceful nights sleep tonight. Take care and try to exercise too as much as you can. My dr and family and friends keep telling me that too. That's really important, though I'm sure you already know that. I hope again you feel better soon and I will keep you in my thoughts tonight. You are now another one of my friends on this forum and I consider you part of my family too. So you are not alone anymore. I hope you feel a little better now and have a better night. Take care. P.S. We're not too far away from each other either. I live in Jersey. So that's good to know!

I'm so sorry. It must be scary having it spread to the other arm. This disease does suck but you can get through this.

I know what you mean about lack of sleep. I have not slept through the night since mid December 2012. I know I am a newbie but I am getting so run down. Plus, with all the pain, I need sleep now more than ever.

The people here are so helpful and the board has been a great support for me. Even just knowing that there is a group of people who understand is such a comfort. (I call you guys my CRiPSy Crew.) I hope it helps you at least a little to know that we get it, we know how much horrible it is. I wish I could tell you how to make the pain stop; I wish I could do that for all of us. But there is always someone here to listen.

Thanks! I take meds not that they do much, but it helps. I also have lumber vertebrae problems and neck problems. Pa n isn't new to me but I still hate it. I don't have a lot of use with right hand wrist arm anymore and with the left acting up I can't even drink my coffee! If it's go with straw or spoon or fingers I prob ain't eating or drinking it. I have however lost 7 lbs of the 45 I gained on prednisone. I call it the cereal n milk diet lol

Hi Mommy, I am sorry your RSD is spreading. Mine has gone from right shoulder and arm to my entire body, over time. I know how that first spread is though and how awful it is when you get to the point where you have to accept reality. You had said that you can hardly use of the right arm, wrist, hand now. Please, please do everything and more to keep using that arm and hand. Do you have a physical therapist? If not you should do everything in your power to get one, hopefully one who has RSD experience. You need to find exercises you can do every day, so that you do not lose the use of your right arm and limb. If you admit defeat and do not use a part of the body, you will suffer from the breakdown and contortion of cartridge. Within one month of my coming out of a right shoulder surgery that initiated my RSD, my right arm was frozen into the position the sling I was to wear for a month forced it into and I had almost no movement in my fingers, none in the rest of the hand or wrist. At that point I was not able at all to move it myself, I required passive movement, where the therapist slowly moves your body for you, while tears roll down your face because the pain is so horrific. I have seen the horrible distorted limbs of people who did not use and lost the use of limbs, but I have also seen other RSD patients in person, who stopped moving and because they were never properly diagnosed, they did not know that they would lose use and the limb would become twisted, if they did not use the limb.

Please, do not allow that to happen. You have to force yourself to use that arm and hand. I know how awful that is to do and how awful it feels to force yourself to tough a door knob and to barely be able to move it a fraction. If you don't have a PT or ex resides given to you by a doctor, you can find some on line. One of the exercises I did was scrubbing, movement is as if you have a sponge in your hand and you apply pressure on a counter or table top and rub the surface up and down. If you can barely do that, then barely do it and barely do it several times a day for short periods of time and do it every day. I think if you look at the RSDS.org website, they might have some exercises on a video there. They did at one time. If you can't find them there them do a search on physical therapy exercises for RSD. I know there are some on line that a physical therapist has posted, it's been a long while since I've seen them but I'm sure you can find something. I had very young nieces that I couldn't hold or even hold hands with, much less play with 10 years ago. I still have lots of pain and my RSD is everywhere, including internal places, but I can hold on to those girls now and push them on a swing, and walk my little dogs and load the dishwasher, and so on. If you have grandchildren , don't settle for not being able to use that right arm, hand and wrist and keep that left side moving. Though I have the pain, I do not think I ever lost very much function at all in my left arm and hand. I never allowed it. So keep the left moving, do everything you can to keep all the range and strength you can and work that right arm ad hand. Find something you enjoy to add to the exercise type of movements. I started beading and doing mosaics, to help me with desensitizing and fine motors kills, once I had larger muscles moving again. And use that right hand to pick up that coffee cup and drink your coffee. Any little movements you can perform are hood starts that you can build on.

I am so sorry about your spread , you may not be able to stop it but you can help keep yourself functioning and not let the RSD take everything. I hope your week goes well. Stay warm too, the cold must me outrageous compared to the winter we get here in Albuquerque. We actually moved from Michigan so I would not have to be housebound with my RSD.
Soft hugs, Sylvia

Hi mommy,

Normally I'd write a long message, but fingers are sensitive today (oh the joys) plus I'm feeling pretty crappy at the moment and not sleeping and all the rest of the fun times we gals enjoy so much!

I'm so sorry you are feeling so overwhelmed by this, and so sad and angry and frightened, and...oh, all of those emotions. I remember so well the day I realized that my CRPS had spread from the crazy party it was having in my knee....and had jumped down to my toes. I'd been reassuring myself for weeks that that coldness was just chilly toes, that the pins and needles feeling was from sitting still too long, that the pains were from too many foot exercises (to help circulation). I couldn't believe it. But the main thing was the fear, I was so scared of it, it really did feel like a monster. Since then mine has spread to my left side and my right toes, with my left arm being the latest addition - arms are horrible because you don't realise how much you use them until it hurts. I'm scared of my right arm getting it too for exactly the reasons you said.

You just need to know you're not alone with all these emotions running crazy in your head and heart. You CAN deal with this you know. I know there just isn't much of a choice but every one of us has found deep reserves just to get through the day, and we all find more to deal with what we have to. It sucks, it's not fair, and no I don't understand why NOBODY seems to know anything about this damn condition....

Ahh. What can you do? You find the good stuff, no matter how small it is, and you try to concentrate on it. Distraction is good too, any kind that's legal lol!

I think we all feel lonely with this, that's why we're here yacking on a forum

Find some time for taking care of yourself every day - just one time, just for you and a bit of pampering. I think that is what saves me some days... We're all here, and we do understand how it feels, hang in there chick.

Bram

(fingers did better than expected lol )

I only use a sling when absolutely needed. I use my bio skin brace to help with the swelling, compression helps too. I. Now my husband hurts for me. He is afraid to touch me. I know I can do this. But even brushing my hair is a chore. The cold sucks. We are waiting to move out of this horrible frozen winter state. Humidity don't help either. And that is always horrible. We went to Missouri a year n half ago. Heat no humidity. Loved it. Held my newborn baby nephew with not much pain. I just don't wanna leave my family here.

I'm glad you got to hold your newborn baby nephew with not much pain yesterday. That's great. I wish you had no pain, but at least you got to hold him. I'm sorry you feel you need to leave your family for a warmer climate, but you can always travel to see them, if you do decide to go. I don't like the cold or humid weather either. It make my rsd and fibro pain hurt so much more. I try to keep gloves on even in the house when it's really cold and always have my heating pad handy. I layer clothing as long as the meds I take keep the burning on my skin to a minimum. Nuerontin and Percs help alot with that. Anyway, I'm glad you had a better day yesterday and hope you have a good day today. I'm having trouble sleeping tonight (as usual) so I thought I'd log on for a moment to say hi. Take good care of yourself and remember that your always in my thoughts. Hopefully, I'll be able to sleep eventually. Bye for now.